Tuesday, 28 July 2015

The fabulous Neville Starnes (PDA Society and presenter of the bluemillicent videos on YouTube) once 'redefined' PDA as ‘Permanent Demand Anxiety’ and I have found this so helpful and is how I think about my daughter all the time. It has also really helped me explain things to other people who hear the term Pathological Demand Avoidance and don't 'get it'. I was sick of people saying things like "Well she doesn't avoid every demand does she ?" or "But that doesn't explain the swearing or violence?" etc. Aaaargh!! The term Pathological Demand Avoidance unfortunately focuses on the behaviour that results from the anxiety. Permanent Demand Anxiety reminds us all that it is the anxiety that causes the behaviour.

It means I can give them an analogy or explanation that they might understand. e.g. someone who is fearful of spiders - they may be able to cope with little ones, or ones far away, or pictures of spiders or spiders in the garden but not in the house. They are still anxious about spiders but they may not react - they are 'coping'. That person may become more agitated if there are lots and lots of little ones, or a big hairy legged one up on the ceiling or are watching a documentary all about spiders etc. They would almost certainly react if one ran across the carpet in front of them. I then ask how they would feel if their partner or best friend dropped a spider on them? or opened a box with 100 tiny spiders and let them free ? And then got a 5 inch tarantula and put it in their lap ..... I can almost guarantee that the most non-violent, loving individual would experience and probably exhibit physical rage towards that loved one!

And that, I tell them is what it is like for my daughter every second of every day. She wakes up every morning surrounded by 'tiny spiders' and every second of every day she is aware of bigger ones lurking and massive ones that might be dumped on her without warning. And sometimes it is the last little 'spider' that triggers the explosion. I try and explain that the tiny spiders can be things like knowing she has to get out of bed, or go to the loo or eat breakfast. The demands that cause such devastating anxiety to our children can be so apparently 'undemanding' that other people fail to understand they are there at all.

And the thing I find most difficult to cope with is the fact that she is hard-wired for this anxiety. She will never be without it. My job is to help her find ways to cope with the anxiety, reduce it and not let it control her. I monitor and reduce the demands when I can or when I need to so that she has as much time as possible where her stress levels are low enough for her to think clearly and practice skills she will need in the future, and to enjoy her childhood (or at least not beg me to kill her because life feels unbearable).

I don't sanction or remove privileges when she has violent outbursts because I understand they are driven by overwhelming anxiety. And every single time it happens she has been mortified and apologised afterwards. She has frequently asked me "How can you love me when I am so horrible?" My biggest reassurance comes not when she tells me that she loves me, but when she tells me she knows I love her.

I also know that my daughter is incredibly brave but she needs time and space to gather together her strength. She might be able to step back, think about looking more closely at a 'big spider' and in her own time and with complete control over when and how far she goes will choose to face her fears. If she is pushed towards her fears she will react against and pull away (or if I'm honest she would probably swear and hit back!) I now have confidence to allow my daughter the time and space she needs to make decisions and this has proved incredibly positive for both of us.

Friday, 24 July 2015

Summer so far, aside from being a bit of a wash out, has been interesting!

Hannon, Lily, Harriet and I have made more than a few trips to Houghton House after discovering that it is brilliant for role playing games. The kids have really let loose and played Batman, Avatar and countless other chase games/shooting games/hiding games/mystery games and ghost hunting games. They have played for hours on end in the beautiful surroundings of Central Bedfordshire.

To be honest, I'm a bit worried that the local residents might think we are 'casing the joint' for some big job as we have been there so often, mostly at sunset!

But, wow, to have them voluntarily leaving the house and running around outside regardless of the weather has been magical and it is a nice reminder of why we love the Summer so much.

In other news, Dominik called the police to come to our house. Not so great. No.

He told the dispatch lady that I had 'tried to strangle his face' and that he was being assaulted. Sigh. I am more than willing to confess that yes, I did lunge at him (but that I lunged at him due to tripping over the end of his bed) whilst trying to take away his controller and headset in order to stop him playing a game which was causing him so much anxiety that he could no longer distinguish reality from fiction. Shit.

About half way through the call he realised what he had done and began back-tracking at a remarkable rate, but obviously this was to no avail. The dispatch lady explained to him that she had a duty to send an officer to our house.

Lily went into instant meltdown imaging the worst and fearing that I would be arrested and Dominik was almost suicidal thinking about the potential consequences.

The male officer arrived within ten minutes of Dominik making the call and he was professional, courteous and friendly to us all.

He listened to what we all had to say and took the time to explain to Dominik that what he had actually done was waste police time for what was essentially a fight with his mum over his computer game.

Domink was embarrassed and upset but handled it well overall. I was embarrassed and upset but also grateful at the speedy response and the understanding shown by the officer.

All's well that ends well I guess. I think Dominik would hesitate before doing it again and I do think he learned this lesson. It has always been one of my greatest fears if I'm honest so I'm glad it is out of the way now!

I should add though, that the officer did tell Domink that he should call again if he felt genuinely threatened by anyone (including me).

Ummm, what else? Well, we bought a little tent for our back garden and have had some great fun sleeping out and playing games in it during the rainy days. Hannon has discovered that he can read Harry Potter by himself. Lily has just had her first ever day out without me (or anyone else she is related to) and it went really well overall. She did hide in the toilet on two occasions during the day and she had a massive meltdown once she was home but that is to be expected I think. I'm just so proud of her for wanting to do it and managing to too!

We've already been on our holiday to Scratby as well. That was a beautiful five days away. We did lots of swimming (Lily can now swim on her back) and we went to the beach and Great Yarmouth Pleasure Beach too. It all went by without incident but that is mostly because Dominik did not come with us. He chose to stay at home with my mum and the animals.

He told me that whilst we were away he did not have a single meltdown nor did he lose his temper or swear (my mum agreed) and he made a point of telling me that he should have been an only child. Oops.

Dominik just likes to be left alone and he loves the quiet.

I do feel awful when I hear this from him because I just feel so guilty that we can't do more. I obviously cannot make the house silent at all times and I obviously cannot vanish my other children but I wish I could, just for him. I'd make him a giant soundproof bubble if I could.

Although, he is very lucky I guess because he does get so much down time. He does not have to contend with school, shopping trips, visits to relatives, day trips etc etc if he does not want to and I suppose it must be helping.

This week he and I focussed on his self-esteem. He admitted to me that he does not often like himself and that he is completely unsure of how it feels to be truly, intrinsically happy. We talked about dopamine and what it does and we discussed how his computer creates that hormone for him and therefore ensures his 'happiness'.

Dominik knows that he needs to learn how to be happy in himself and without any external stimulation but he also knows that at this time, it is not possible. He knows that he is at increased risk of becoming a lifelong 'addict' in some way and he is conscious that he does not want this for himself.

He is also aware that he missing out on so much, this year particularly. He has missed countless trips to visit good friends and two short breaks. It makes me as sad as it makes him happy.

Together we can work this out. I know we can. But, like most things, it's just going to take a little time, patience and practice.

About Me

Hello.
Welcome to my blog.
I will be mostly writing about the day-to-day goings-on of my household (currently, three children, one cat, one dog, one hamster and a snake with an additional little one on the way). UPDATE - Four children, one less hamster and now one less dog and no snake..
We are an unschooling household and my kiddos have never been to school.
I have two (possibly three) little people on the Autistic Spectrum and I guess I am too!
Please join in the discussion!